April 6
He’s pretending to be a mannequin with his head on a headless clothing dummy.
On this day a year ago I got a check-in call from the hospice people - someone I hadn’t met. I told her about pain medication and answered her questions. When I told her he hadn’t peed the day before she said a nurse would call later and I should tell her about it. I told her he hadn’t had anything to drink for nearly two days, and she said it doesn’t matter - he might need to be catheterized.
When the nurse called I asked her about it and she said she thought a catheter would be a good idea but she would talk to the nurse who had been here the day before and actually seen him. I asked how we would know since he couldn’t communicate and she said sometimes patients who need to pee thrash around and try to get out of bed. Which Randy hadn’t done. She also said I could press on his bladder and see if that made him uncomfortable. And I was immediately anxious - Where’s the bladder? How will I know if he reacts because his bladder is full or if he reacts because pressing on his bladder also puts weight on his spine, which is wrapped by tumors? Why the hell didn’t I ask about hospice care in the hospital with qualified people around him?
By the time the second nurse called, daughters Hayley and Kendall were there and I was in the shower. The nurse told Kendall she didn’t think he needed to be catheterized and I was confused about the differing opinions. Now I wonder if she didn’t think a catheter was necessary because she didn’t think he would live long enough to need it. She was the one who had said maybe he wouldn’t get up again.
Also on this day the home health aide came - she did things, gave us instructions, helped us to prop him up on one side to keep him from getting pressure sores. I was comforted by his presence because she knew what she was doing. At first she said we should turn him and I was very forceful in saying that he shouldn’t be moved much at all because his spine was full of cancer and it was hurting him.
And then the medical supply place came and delivered a bunch of stuff - most of it not needed. One thing that arrived was some kind of thing for the mattress that pumped up and let out air - maybe to prevent blood clots?
And there’s another thing I regret: Why didn’t I say he didn’t need that? It would be painful to put it under him because he would have to be lifted. And if I had known he would be dead the very next day I would have just put the stupid thing in the garage. Because even though he seemed to be unconscious he could still feel pain.
I forgot about the sheet sling - there were three of us who could have lifted him carefully, but Kendall did it herself and cried. She asked why he wasn’t taking more morphine and that’s a good question, right? I guess because I felt so insecure about not knowing what I was doing that I followed directions more than I usually would. After the transplant we learned to follow the rules precisely and not to change anything without checking with a doctor. Another regret - Why didn’t I advocate for more pain medication? And would it have been so terrible if I gave him too much and he died? I feel like I wasn’t a good enough advocate, like I let him down when he needed me most.
Daughter Erin came over after other daughters had gone home and a home health aide came to spend the night so I could sleep in the other bedroom. And, amazingly, I slept.